-
Support us
Tag Archives: meetup
Meet up for Rare Disease Day
We held two great friendly gatherings to celebrate Rare Disease Day 2025 with patients and their relatives. The first was online on Friday evening. 11 peole joined in. For up to 2 hours they discussed their personal stories about living … Continue reading
Online meet up for Rare Disease Day
To mark Rare Disease Day, we hosted a special online meet-up for the UK aniridia community! Most people there were adults with aniridia, both sporadic and familial. There was also a parent with an aniridic child, and a scientist. They … Continue reading
Meet up in Kensington after Sight Village 2024
Twelve people joined us for dinner and chat about aniridia on 5 November. This included an American woman who has recently move to London for work and another long-lost member as well as several regulars. It was immediately after the … Continue reading
Meet up to mark Rare Disease Day
18 members came to one of 4 meet ups around England to celebrate international Rare Disease Day 2024. They got to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. As always it was a wonderful … Continue reading
Meet up for Aniridia Day 2023
Seven peoople with aniridia came to the pub in St Pancras Station celebrate Aniridia Day together this year. The youngest was 19, the oldest 67. After buying them welcome drinks there’s was lots of great chat including about about studying … Continue reading
Meet ups for Rare Disease Day 2023
Seventeen people were at our get togethers last weekend to celebrate Rare Disease Day, in London and Cambridge. They came to meet fellow aniridia patients and relatives to chat about all aspect of aniridia. Andy hosted the Cambridge event in the … Continue reading
My first aniridia meet up
After moving to London, I stumbled across Aniridia Network (AN) and decided to sign up. All my well laid plans to get involved, however, fell to the wayside as I got distracted by PhD study, making new friends, and getting … Continue reading
Meet up & stall after/at Sight Village London
We held a wonderful meet up of people affected by aniridia in Kensington. It was after the Sight Village exhibition where we had a stall. It was a brilliant day and evening where we talked about all aspects of aniridia … Continue reading
Meet ups for Aniridia Day 2022
Four gatherings of people affected by aniridia were held around the UK to celebrate this, Aniridia Day. Adults with aniridia hosted the get-togethers. Fellow patients, parents, children, came along to chat about life with our condition. Aniridia Network also bought … Continue reading
Rare Disease Day 2020 Meetup
Rare Disease Day is always a very good opportunity to bring people together and raise further awareness of aniridia. To mark the occasion, trustee Eleanor Burke hosted an aniridia meetup at Wynn’s Hotel in Dublin on Saturday 29 February 2020, … Continue reading
Aniridia Network 